PMR Anyone?

Hello, I am writing to you, John, because you are a leader 🙂 I was diagnosed a couple of months ago with PMR, eventually I found this forum and have been very interested in the postings. They have given me a lot of information. At first I was misdiagnosed and given antibiotics which simply got rid of the good bugs in my system. Also I had shingles, with delay diagnosis, because I thought I had been bitten by a bug or spider. (I am outdoors a lot in wooded areas) My doctor started me on 3 days of 40mg. of prednisone, then to continue with 20mg. After 10 days of this, I lowered myself to 5mg as I had dizzy spells, fatigue. After 10 days of 5, I lowered it to 2.5mg. Starting to=day I am going to try to not take any and see what happens. I am doing this because I am trying to protect eyes and heart. This is my background - on the 17th January I will turn 91. Almost 4 yrs ago I had double by-pass surgery. My heart attack was a surprise to all, including my general physician. Until that time I played tennis, pickle ball and did Zumba. Until the mid 70s I was an active runner, mostly 10K and half marathons.

One of the things I am concentrating on now is diet. My normal diet is mainly vegetarian. I've continued this, but even watched it more carefully. Practically no processed food, especially sugar, organic vegetables and fruits, nuts, yogurt. I can really tell the difference when I eat "correctly" and when I slip - less pain and more energy. I am trying to be realistic. I do not expect to be free of pain as it is part of life, but to have pain at a manageable level for quality of life. It is encouraging to read about people who have flair ups, but manage to get back to lower doses.

Maggie T

Hello Maggie @noosat1, welcome to Mayo Clinic Connect. Thank you for sharing with us. Also, thanks for the kind words but I'm just a patient like you. I am fortunate enough to be a volunteer mentor to help folks find their way around Connect and share my experiences and treatments - which hopefully help other members. One of the good things about Connect is it will help you learn more about your condition and at the same time help you become a better advocate for your health. It sounds like you have a lot of those traits now with good understanding and expectations of managing your lifestyle and quality of life...much better than myself.

May I ask if you mentioned to your doctor about having dizzy spells and fatigue? It might be a good idea to discuss your plans with your doctor to keep them in the loop.

John

P.S. - Just in case you need a little positive energy, one of my favorite sites has short videos that are really uplifting.
-- https://www.resilientoption.com/

I have an appointment with my regular physician in a couple of weeks. I have been keeping a daily log, which I will condense and discuss with him.. Even though there was some "bungling" with misdiagnosis in the beginning, his PA was partly to blame, I do trust him. I also have routine visit with cardiologist. I have learnt that even when one has good, trustworthy physicians, it is important to help manage your care yourself. An aside, for year I have laughed at the question "what is your pain 1-10?" Every body is different and we certainly have different pain tolerances. In my middle years, as a competitive runner, I certainly learned the difference between discomfort and Pain. I could run through discomfort, but not pain. I m afraid in the present culture, we are told discomfort is pain which has to be repressed. Hence the overuse of painkillers. I just want to have what I consider a quality of lfe, which does accept some pain.

You can only treat the symptoms for autoimmune disorders and rather than calling prednisone the devil I would prefer to call it a saint. It literally makes the symptoms go away for a while. I know of no other pill, diet or exersize that will do that. Drs shy away from addressing the causes because the answer is blowing in the wind. To many possibilities with no absolutes and drs hate to be wrong. Each individuals body attacks and responds in its own unique way and only you can figure out the triggers. With my PMR I cannot get out of bed or walk for 2 days once a month. It’s like clockwork and I’m still clueless about the cause. If I didn’t have the prednisone it would last days longer. There is no fruit or yoga stretch that’s going to fix it and doctors, including rheumatologist, won’t admit it but they can’t help. They can charge but they can’t help. It’s totally up to you to identify the triggers and dial in a fix but don’t throw away the prednisone

Hi @msvl1998, welcome to Mayo Clinic Connect. Far be it for me to call prednisone the devil. When my PMR was active, prednisone was the magic "make it go away" pill. Weight gain was the only side effect I had and after the first occurrence I was ready when it came out of remission the second time so I was able to stay on top of the weight gain issue.

When my PMR was active, mild exercise was essential in staying flexible and being able to move. Even today with the PMR in remission I have to move around some so my joints don't stiffen up. I find riding my recumbent exercise bike really helps me keep the joints flexible. My thoughts are that the prednisone and exercise go together to help treat the condition.

Arthritis Foundation has some information you are probably already familiar with on PMR:
-- https://www.arthritis.org/about-arthritis/types/polymyalgia-rheumatica/

It sounds like your PMR is still active. Are you trying to taper off of prednisone?

I have had a "wake-up call" As my daughter has said, "you cannot always will pain away." Shortly after diagnosis of PMR, I thought, " I am mentally and physically strong so I can start getting off prednisone all by myself" ( My doctor is very hard to contact.) So I have been rapidly lowering dose until not taking it at all. This last week, I have been almost comatose with pain and stiffness once again. I have learnt my lesson. Yesterday I started back on 5mg in the morning, think I might do better to split that between morning and evening. I will see my physician in about 10 days, when I plan to have a long discussion with him on laying out future behavior. I do dislike prednisone very much as it affects my vision, but can actually function quite well when taking it.

Tapering off can be a struggle. The first occurrence of PMR I also tried to taper off as quickly as possible and it came back to bite me with a vengeance. The first time around I went back and forth between 1 mg and 1/2 mg tablet for about six months until I finally was able to stop taking prednisone with little or no pain. I tried to make my taper schedule weekly and kept a log with a pain scale which is kind of subjective but gave me a reference. Hoping your PMR goes back into hiding.

Hi John yes tapering off the pred. is tricky as you know. It all depends on a couple of factors, how much discomfort you can stand will determine on how much prednisone you need. no 2 bodies are alike & where do you stand of the 1-10 pain threshold. As I had stated before plenty of exercise & a good diet helps. After almost 2 years dealing with PMR I am stuck on 5mg/daily tried to go lower only to find myself going back to 5mg. Strange disease but life goes on & yes thanks to the pred.